Sunday, May 23, 2010

Thanks and Prayers


CJ is really excited about the contest! (see below post if you don't know about it) It has been a lot of fun this week watching him get excited about something. We spend a lot of time working on behalf of other kids and their families that are battling this disease so this has been a lot of fun to focus on something for him! It was also a great distraction for him all week as the day of chemo drew near and his anxiety was beginning to build. He did well at his appointment considering it is not something he really looks forward to.

He had to fast for his spinal tap and intrathecal infusion of chemo directly into the spine which he was put to sleep for. Then he had the chemo through the port (Vincristine) when he woke up. This chemo is extremely strong and is very important to be sure it goes directly into the vein. Ever since I learned it could literally eat his flesh away if even a drop spilled on him I find myself extremely nervous when it goes in. Thankfully, CJ has the best nurse in the world and we are so grateful God placed her in our lives to see us through this journey.

CJ had more side effects this time than usual. He had the itchy face he usually has to deal with, and this time he was really not feeling well at all after chemo. He was dizzy and his stomach was upset a lot. Then he could not sleep and therefore mom and dad could not sleep. So after a long day Friday of chemo and no sleep that night, Saturday was a very tiring for all of us and a day of recovering for him. By today he seemed more like himself again.

After chemo was completed, he began a round of steroids to help him rebuild and he is already daydreaming about food. Today in church I looked down at his notes and noticed he had drawn a pizza, a hotdog, and a burger on the paper. I had to laugh at that evidence that the steroids are kicking in! We still laugh about the early days of treatment when he was first on the steroids and he would get caught watching the cooking channel!

A few questions have been raised about the contest about how many times you can vote. The contest says two different things. In the official rules it says "One vote per day per person" and on the main page it says "One vote per day per user". Some people misunderstood and voted multiple times a day because the site allowed them to. We recommend every person votes once per day per person per email address. Some have asked if a family shares an email address can they all vote from it. I honestly don't know the answer. I assume they have a way to weed out the votes that are repetitive so just keep voting! The voting last until this coming Sunday, May 30th at midnight. Please vote once each day for him and spread the word.


As a follow up to the previous post, so far he still has his hair! I have noticed some falling out again but not like before so I am not sure if he is losing it completely again. It doesn't seem that way but we are aware of kids who did lose it again spontaneously towards the end of treatment so who knows!

Please continue to pray for CJ's healing!

We can not end this update without asking you to pray for some other special kids that are heavy on our hearts lately.

Ellie Potvin is a special little girl whose family is in the thick of the battle to save their daughter from this terrible disease. She has been removed from any forms of curative chemo as it has all failed to cure her and the family is on a quest to save her with alternative care. Please pray for God to heal this little girl. Please uplift this family in your prayers. Ellie is a twin sister to Grace.

I also ask that you pray for Truman. Truman is a 9 year old boy nearing the end of a year of intense treatment which included heavy doses of chemotherapy, hospital stays, and the loss of his leg and some of his hearing in his battle against this terrible disease. Please pray that he can reach this milestone and all scans will be clear at the end of treatment!! Please pray as he adjusts to life after cancer without his leg. We are super excited that we have been able to step in and make this little boys dream come true when his Make a Wish was recently denied. He will be coming to South Florida in June for CBC to make his wish come true through our friends and corporate partners at the Miami Seaquarium. You can read about it on his blog at the above link with his name.

There are so many kids I could list to ask you to pray for. I know some of you already follow the caring bridge pages of other kids. For those that don't or only know CJ's story, please know these kids are amazing and unfortunately, numerous, which is why we are doing what we are doing through the non-profit we founded Children Battling Cancer, Inc. (CBC). These kids are battling this disease and losing limbs and lives to it. It is heart breaking to follow a child's battle for months or a year and then watch as they pass away. I don't know what the answers are or how to stop this. I only know how to do what we can to help the families during the battle, assist them with their needs, comfort them in their losses, and add whatever joy to their lives it is in our ability to.

Thank you to all of you who have supported our family and showed us what it looks like to care for hurting families so we are now able to do the same for others.



9 comments:

ily said...

VOTE VOTE VOTE!!!!!! I Vote for Cj everyday......I have three emails address so I vote three times!!!!
Let's make Cj happy and vote our little hearts away!!!!


I am glad Cj is feeling upto eating that is always a good sign.
Love ya,
ILY

Janet said...

We are voting every day using several emails. Keep the faith!
Sedanos

Anonymous said...

We are voting too and friends at the office also and even some friends in California...yey!!!

We love you CJ

Anonymous said...

Yes, we are voting for CJ, too!! Love, Aunt Karen

Kevin said...

We're voting! What does it mean if I daydream about food but am not doing chemo?

CeCe said...

Congrats CJ, you deserved winning!!! :D Enjoy the prize!

Dan said...

Congrats CJ. I'm still praying for ya each and every day.

Cobra Dan

Anonymous said...

Congratulations CJ!!

It was great to see your picture as the winner!
We voted for you everyday!

Congrats again!

Love ya,

Viguié-Pérez Family

Janet said...

YIPPPPPPPPPEEEEEEEEEEEE. You won!!!
Congratulations.
the Sedanos